3. Navigating Your Family Dynamics After a Major Medical Life Event

Good Morning, Everybody! My name is Will Schmierer Welcome back to another episode of The Lovable Survivor Podcast today is Tuesday, February 7 2023. Sorry, that was a little weird. I keep thinking, I'm not going to say the date. But it is February and this episode is being recorded in February of 2023. I think that is very important. Because this is a podcast by a survivor for other survivors and family of survivors, caretakers, whatever role you might play in, in the equation, it is not an easy thing, to be a survivor, to be a family member of Survivor, to be a caretaker for Survivor, everybody plays a roll, they are all important. And they are all very different. And that's why in this episode, we will be talking about family dynamics. You know, this is going to be different for everybody. So it'll be a lot of kind of what I learned what I would do differently, that's generally a theme of this podcast. You know, I think there are people who are survivors that could benefit from this podcast, people who are going to be a different role, they may be the primary caretaker, they may be a secondary helper, they may be a an immediate family member, they might be aiding the individual who's had the stroke or brain injury or whatever you might be in that person's inner circle. And you might be on the outside, looking in wanting to help. Again, everybody has a role and plays a role. And I think when it comes to family, it can be very, very tricky. It is not much different than every other part of life. You know, in any facet, so I think, for me, yeah, I think they're gonna be kind of three main lanes on this particular episode. Again, family dynamics is you can have broadcasts all about just family dynamics, period. And I'm sure we all have a lot of interesting stories. I know especially around the holidays, we see posts on social media and a whole bunch of other things. where everybody's, you know, got that uncle or aunt or whatever, you know, everybody's got something to their story on. There are very few people that are completely on their own. And while that may seem daunting, when you find yourself alone, anybody that's had family, I love my kids. I love my wife. I love my immediate family. But yeah, I think we all eventually can find some peace with being alone. It's not initially what you think you're gonna want. But as you get older in life, I think you kind of value that alone time to sink and have a break and just chill. Which, ironically, when I did have my stroke and was in rehab, you know, there, I didn't have a lot of options. There was nowhere to go or nothing to do except for doing the work. And, um, you know, I tried to see that time in inpatient rehab in the inpatient hospital to take the time to do that work. I'm very lucky to have a very supportive wife. And yeah, I mean, I guess we can get it. Yeah, let's jump into the first phase. So as the stroke survivor, if you are a stroke survivor, or brain injury survivor or youth has survived any major medical event and you are the primary patient, listening to this podcast, there are you know, I think I talked about on the last episode, obviously, the overwhelm there is a lot of information coming at you. There are lots of things you may want to do may need help doing. You know, I think looking back, I don't think I hands on things too poorly. What I had to say I did it right. But I think I had a good mindset. I knew a couple of things. I knew pretty quickly there were limitations like I couldn't get the bed. So I need to ask for help on. You know, the first read the first week before I got to the rehab hospital, I was in the, what I call the regular hospital. You're pretty confined to the bed as a stroke patient who could not walk and was enormous. There. Were you know, there were safety issues. There were fall risks. So yeah, there was very little getting out of the bed for me, which was really interesting for somebody who doesn't like sitting down. With you we've had couches as a family. You know, every house I think has a couch right? But I I've never been one to be sitting on the couch. I'm more of a standard or upper. Give me a chair. Give me a thing. I don't want to get into a couch. That might be a six foot eight big guy thing where if I get in the couch, I'm not gonna get out of the couch. That could be a stroke thing. I don't know what it is. Exactly. But um, yeah, I'm not a what you call a couch sitter? I don't know why. That's just not my thing. So yeah, it was really hard for me, initially, and going back, you know, getting on track here with family I recognized. So my situation is a little unique. When I had my stroke in December of 2019. I was in the hospital. My family was coming in town for Christmas anyway, because we had just moved Florida. My two sisters and my brother in law were all coming to visit. So the timing kind of worked out really well. Kinda. It 2018 I lost my parents to a tragic hiking accident. You can google my name, you can google my parents themes. Yeah, they. So we had just gone through that the previous year. So it was about 18 months later that I had my stroke. Not long after I moved to Florida. So I had family coming in town for the holidays. Not the holidays anybody was expecting, that's for sure. But because my sisters and I and my brother in law, my immediate family, my wife and three kids, we had all just kind of a year and a half ago dealt with the loss of my parents. So we knew how to bond and work together quickly to figure out a plan. It was very clear, I was not going to do a lot of it, my sister, both of my sisters are younger. So the my middle sister, I guess the the middle child, but my parents, the older of the two sisters sort of took the main reins, which she always has. And she's very good at that we're all pretty good at being problem solvers and figuring out problems to solutions. So we had a little bit of ahead of time, we had practice working together as kind of a team. And we were able to figure it out the immediate very quickly. So we were able to work together to delegate. You know, my brother in law helped with a lot of phone calls and stuff. On the financial end, he also helped my wife and kids. Yeah, I mean, you just kind of bought bind together and you find your team, which I already had pretty well established. At that time. Things are different now. But that that's kind of where I'll go next on. Yeah. You know, so I had my inner circle, which was my two sisters, my wife, my brother in law, very tight, and they helped me with my family. My wife helped a lot. You know that that part was pretty well handled. My sisters were very instrumental and I owe them a debt of gratitude. And I still to this day, I'm very thankful and I think they know that if they need anything. I would certainly do the same. The best way I can. Now, which is usually for me to get out of the way, but um, yeah, I mean, I think we just kind of all know how to do that as a family. So very lucky in that regard, and they know that The outer family, not the inner circle is not my forte, that is not the area that I excel in nor want to. You know, I'm happy to talk to people. But yeah, I mean, I think the initial clear thing was that I was safe and stable. I obviously was messed up from the stroke, and the subsequent MS diagnosis two months later. But they were helping us navigate things, and they were sort of shielding me from having having to deal with any outside people. That's not to say I didn't, and I am happy to but yeah, I think there is, as the survivor, it, there are some things that are gonna fall on your plate. You know, and I think just recognizing that you're going to make mistakes, as an individual with family. Owning those mistakes, just being doing the best you can is good enough. You know, people are going to respect boundaries, some people are not, it's not any different than life, I think you just have to you don't have to do anything, I think you need to make sure you're you're you're sort of asking and keeping yourself in check. And if you're not good at that a guy can tend to be a get very neurotic, sometimes I get overwhelmed. You know, and again, with stroke, so many physical limitations initially, you have to get comfortable asking for help. Thankfully, I'm pretty good at delegating. So you know, we develop system. Nothing's perfect. I think getting everybody on the same page, where it's like, it's hard for everybody, you as a survivor, obviously, it's going to be a hard, long, difficult road. Caretaker. Really hard on them. Family really hard on them. It's hard on everybody. So I think everybody wants everybody is clear that this is not easy. For anybody in any role. And that everybody is working with good intentions, nobody's out to hurt anybody, nobody's out to you know, do the wrong thing. There are no playbooks for this. It's it's really all you can compare it to a lot of things, but it's, you know, it's kind of like a when disaster strikes, you know, how do you figure it out? And you just do the best you can. I mean, I know that's really cliche, really generic. But your situation is going to be different than everybody else's. So yes, do I want you to listen to this podcast, but I want you to take what I say and translate it to things that work for you and your family. I think everybody on the inside team just needs reminders that everybody's doing the best they can, you know, when you go talk to doctors and nurses, be polite, be courteous they are. You know, I love my doctors and nurses in any staff member at the inpatient hospital here in Jacksonville that I worked with. I mean, I was eternally grateful. You know, the job isn't pretty and there are lots of people in the inpatient hospital that are also going through things. And so a nurse or, you know, a CNA or a doctor might have just walked out of another room with just a weird thing happen and emotions are high. So you know, I always tried to keep it light and keep, you know, I wanted to be honest when they ask questions, but I also like to make jokes and make people smile and make people laugh, because it's a really hard thing. And you know, I say it all the time. But improv is really one of the best things I ever did. Because it just allowed me to kind of adapt in situations and you know, when you find yourself having a stroke at 37, which was, you know, I was 37 that was really young, but if you ever you find yourself in this spot at any age, you know, you just you're not trying to make a light of the situation, but you quickly realized you're presented with a very unexpected problem hitting you square in the mouth, right now. The face so to speak, it is nothing short of a gut punch. You know, and everybody's going to handle that differently. But being emotional and irrational is going to happen. But and it's okay. Just be mindful. And I think that's, I mean, I think we're all trying to do that. Anyways, at any point, if you are the caretaker if you are family, and you're not the one who's actually had the, the actual event, I'm not excusing the survivor, or the person who's had the event, but just know it's going to be difficult for that individual as well. And there are there are lots of emotions for everybody. And again, everybody plays a very critical, critical role, but I think it can be really jarring initially. Once the individual like myself, once I kind of realized like this is I am not going to do better in two or three days like once I it starts to sink in, because there is a little bit of a delay, or I recall there being a delay of like, oh, man, this is this is real, this is like there is no pill that I'm going to be able to take to snap out of this, this is not a this is not a take two Advil or two Tylenol and sleep it off or, or wake up tomorrow and feel better. This is not a cold. This is This is major. And although I didn't want to hear it at the time, from some doctors who are a little I think abrupt. They were they were a spot on. I wish I had a wake up call earlier, I wish I was able to stop it in some way. Unfortunately, I can't go back in time. And I think that's important too, for the individual and for the family is that this is going to be a long, hard road, it is going to take time some take less than others some you know, one of the things that I often struggle with, and honestly struggle with until about a year ago was that I just kept thinking, Okay, well, I'll be that person that wakes up one day and has, you know, everything's fine. You know, that that remains have had yet to be true. But um, and never say never. But it is less of a thought now than it was in the early days. Because I think in the early days you get so you kind of just don't know, you don't know what you don't know. And it's confusing too, because, you know, everybody and family, you're all trying to work together and do this work and get into a good rehab facility and so many things really, um, you know, and that's why this is this is this is still kind of the early days, and kind of part of that early overwhelm, is that on. With an event like this, it is a little less straightforward than other things in life example. Let's say you play sports, maybe you're in high school, you know, maybe when you're a kid, you broke your leg or an arm and you go to the doctor and it's about, you know, six to eight weeks, you'll be in a cast and you know, that just takes a matter of six to eight weeks. And generally you follow that up with a little bit of physical therapy and you know, in a matter of time, maybe not 60 weeks, but you know, in a couple of months, you're back to normal. And that is what I call sort of a straightforward injury. When you've gone through a stroke or maybe a heart attack, cancer, anything, anything that is a kind of what I consider a significant life event. You know, TBI you know, there are people who get injured in work or on the job. Um, you know, if you find yourself in a an inpatient rehab hospital, that means you've had a significant life event. And so the timetable changes from 60 weeks to TVD which can be really, really tough again, for the individual, for the caretaker, for the family because It's not as straightforward as logging 1000 hours, 10,000 hours, logging six weeks, eight weeks logging six months logging a year, you know, it is very difficult. And depending on the severity of the stroke, now that caveat there, the classification of severity varies, I think, and I always make this joke is that I apparently did not have what is classified as a major medical stroke, but it majorly fucked up my life. Um, so I would call that major. But, technically speaking in the world of medicine, I guess it's not a major stroke. But um, yeah, that's a little blurry. So the labeling doesn't really matter. Because I think, again, with the brain, as much as we know, when we put men on the moon, women on men and women in space, like, whatever, we have done a lot of things in this world. And it is surprising how few things have not evolved on, you know, and I think that's kind of kind of the impotence of this podcast, and hopefully YouTube channel, and it's kind of the community that I'm building. Behind with survivor science is like, there, there's more to learn. And again, going back to this work, you put in the work, you start doing the work with yourself with your family, to rehab, this is gonna be longer than you think. You know, when I think anything short of longer than you think, is just take, take the win. But again, it can be overwhelming, it can, it can certainly be a lot. And I think one of the struggles is that you don't know. You know, you just keep doing the work and showing up and rehab. If you are able to get to an inpatient or even if you're doing home health care, you know, you have to get those reps in. Because when you particularly when you've had a stroke, you know, your brain is rewiring itself, your brain is rewiring itself, and it's it's got a, it takes time to heal. You know. So I think that is also important, as is these brain injuries. Again, if you're the individual survivor, it's going to take time just to flat out heal, you're gonna have to rest, sleep, you're gonna have to listen to doctors initially, because they are working to get you stable and healthy. I don't care if you don't like the food, eat the food, play, pay attention, like the doctors in the hospital are absolutely on your side. And if you don't like things, just know that there is a reason that they're telling you to do what to do. Yeah, there is a reason the doctors are telling you to do the things they're telling you to do the staff. You know, this podcast is really it's for everybody. It's for the survivors, caretakers, the family, we are going back these early episodes, kind of to the early days, things I wish I knew sooner. But eventually, you may take a different direction. And that's because eventually you probably will leave the hospital, you will probably leave inpatient rehab, if you're lucky enough to get to a facility. You know, but early on it, I would say it's pretty important to listen to people who work in these facilities, because they've seen a lot of things and although certain things may not feel like they work for you specifically. That's okay. Have those conversations, but have them in a kind and important way if you're a family member, just remember to be courteous and professional and with staff and doctors because they really are trying to help people. I mean, that is very clear. But sometimes in the moment, it could feel very unclear. Or it could feel like they are not giving you answers that you want. And, you know, I think that is fair for both sides. I think, unfortunately, at least here in the States, I think there is some hesitation by doctors to tell you either the hard truth or they some tell you the hard truth. Sometimes you don't want to hear the hard truth so it can be kind of It's tricky, just like anything else in life, just like work with you work for somebody else work for yourself. These are difficult conversations, um, you know, but I think if you just remind yourself to be kind to yourself to others, especially staff, medical professionals, they know that this is going to be tough, they have seen it, they may give you again, information that seems irrelevant at the time. And it may be at that time irrelevant, but it's not to say it's not something you should brush off completely or ignore, it may be just something you should write down and see it for later on. Because things are constantly changing, constantly evolving, especially in the early days, again, it's a ton of overwhelm, lots of information coming your way, lots of you know, there's a good chance that if you've had a stroke and you're in the hospital, or you had some kind of brain injury, there are many pieces to the puzzle. So it's it's not only you find yourself, either in the hospital as the individual survivor or a family member, or caretaker or all those things. There's, you know, the staff, it just so many pieces to the puzzle. So, um, again, I think it's just my best advice is to be cognizant, to be kind to, to recognize that everybody on the inside is really working in your best interest. Um, there might be times where there are hiccups, and it feels like things are against you, I assure you, that is not the case. You know, just like family dealing with a loved one, going through a very difficult thing here, you know, the staff, particularly doctors and nurses, you know, think about it, they're seeing tons of patients who have just gone through a similar thing. So they're, they're kind of regurgitating information, they might feel like they're telling everybody the same thing. But at the same time, everybody in a hospital setting or inpatient rehab is in a similar spot, it is the early days, and generally speaking, you know, the information they are giving you is to get you to a stable place, longer term that's going to change, but initially, they're trying to help you get better as quickly as possible. Because we all know, at least here in the United States that healthcare is healthcare, and any help you get is going to be, you know, something you should take advantage of, and you don't necessarily get a ton of time. So the quicker you get to work, so to speak, the better your chances on that can be tough to hear. But yeah, I think, again, remember, nobody's intentionally making mistakes, nobody is intentionally trying to hinder what is going to be a long process, I think everybody's on the page, same page. And try to remember that every time you do get into an argument and emotions get heightened, and conversations happen, and they are tough conversations is that everybody is trying to work to the best interest. As the survivor recognize to that your caretaker is trying to do the best they can. Were there. In that case, I was kind of my wife, but my sisters as well. And it was a team effort. And everybody played a little bit of a different role. And you know, I don't know if I handled it perfectly, but I think I did a decent job. And I probably apologize too much. But I'd rather apologize. And I kept saying over and over, you know if I'm doing this wrong, I'm sorry. I'm just trying to figure it out. And I think in hindsight, I sort of knew everybody well enough to know what their skills were. But I don't know if I got it right every time. And you know, I will tell you over time it it gets a little trickier. But certainly in the beginning. I think everybody knows that. Just remind everybody that you're all on the same page. You're all working towards the same goals and you know, tell your loved ones You appreciate them. Even if you're even if you get into an argument that day, just just know that everybody is trying to do the best for everybody. And again, as the survivor, recognize that the people who are not in your spot are also taking time off work, putting an effort to try to help you rebuild, initially, you know, please, please, you know, I know emotions are heightened, and sometimes you argue, but please remember the people that love you are also making an effort, it feels very different at the time, but uh, you know, go out of your way to be appreciative and say, Thank you. And, you know, I think those are, those are kind of my top things. You know, I'm sure I made a ton of mistakes. And I'm sure there are other things I could add to this. And I'm sure we'll talk about family and dynamics many more times on the show. And I think, you know, in a couple episodes, we'll do kind of that next phase, because I think that's where things also get tricky, because sometimes people are very good at banding together initially, but then, you know, what happens later down the road on? How do you handle that? It's none of it's easy. None of it's the same. But there are things I think we can all share and learn and teach each other and remind each other of when it comes to all this stuff. I think, just remember, you know, I know it sounds corny as hell, but like, when you're going through this at any stage, and it may not be exactly it may not be a stroke, but it might be something similar, and it might be different age, it might be different category. Really, when it comes down to this, remember that everybody is trying to work in their best interests to help everybody and to just be supportive and be kind and also to be patient. Because I think, you know, sometimes we we give into these things and we react and we help but remember everybody has a bad day somebody loses. expected moment, just behind this episode